Finding out about your child’s visible difference

As the parent of a child with a visible difference or disfigurement, it is natural to want to know everything about your child’s condition, mark or scar.

How it will affect them now? How will it be for them in later childhood or adulthood? Will their development be affected? What health concerns might there be? What surgery might be needed?

The questions are endless and this can feel overwhelming. On this page, we provide some guidance on how to get the information you need about your child’s visible difference.

Resources to share with your child

The information on this page has been written to support you, as the parents and carers of young people with visible differences. We have produced separate advice and guidance for children and young people. You might want to share the guides linked below with your child or you could read them together.

• Finding out about your visible difference as a young person.
• Having treatment for your visible difference.

The challenges of finding out information

Coming to terms with medical jargon and understanding what treatment is available can be daunting. Doctors or surgeons probably see children and families in your position most days. However, for you, this is all very new and sometimes you can feel a bit lost in all the medical speak.

It can be a challenge to get the information that you ask for from your child’s doctor or other healthcare professionals, especially if you don’t feel very confident or assertive. Maybe you’re not sure what questions to ask.

Parents can sometimes feel like they are not in charge of their child’s situation or left in the dark and at the mercy of others. This can be very difficult. When you are in your appointments, you might feel there isn’t enough time to ask everything or you might forget questions or the doctor’s responses.

Getting the most out of medical appointments

A good way to make the most of medical appointments is to take a systematic approach to information-gathering. Knowing you have been thorough can help you feel less anxious and more in control.

If your child is old enough, they may be in the appointment too and you should talk through the following things with them. It’s important that they understand what the appointment is for and that they have the opportunity to ask any questions and get the most out of it.

Make a list of all the questions you have in advance

As soon as you have booked the appointment, leave a pen and paper out somewhere in the house and add any questions that come to mind as soon as you think of them.

You could do the same for your child, so they can write down their own questions on a separate piece of paper. You could leave this in their bedroom.

Group your questions together

The day before the appointment, look through your questions and think about if there is anything you have missed.

Group your questions into categories so you feel that the conversation is coherent and connected. This can help you feel more confident in the appointment.

Prioritise the main areas

You should also highlight your main questions, the ones you really need answers to. Your time will be limited in the appointment and it’s important to make sure you get the basic information.

If there are questions you could find answers to by doing your own research, you could mark these as low priority.

Take notes in the appointment

If you have someone with you in the appointment, ask them to take notes, so that you don’t forget what the doctor has said. Even if you go on your own, it is good to take some notes – the doctor won’t mind.

Ask for explanations

Medical professionals often use technical terms and these will be unfamiliar to you, especially at the beginning. It’s fine to ask the doctor to explain anything you don’t understand – and to ask them to put it into language that makes sense to you.

There are no silly questions – the most important thing for you and your child is to feel you are clear and understand what is happening to your child.

Ask where you can find further information

Appointments can be short and it can be difficult to digest information, especially if you are feeling emotional about what you have heard.

Ask the doctor if they have anything you can take away and read or if they can recommend good and reliable sources of information online. This way you are likely to be signposted to reputable information.

Are there any support groups?

Does the hospital offer any support for parents that you can link in with? If not, perhaps they have details of some groups you can get in touch with. You may not want or need this right now but it might be worth getting the details in case you want to follow up later on.

What questions should I ask?

The exact questions you ask will depend on your child’s condition, but here are some examples of things you could ask your doctor or the medical team:

• Why does my baby look different?
• What is the name of the condition?
• What are its effects?
• How might it affect my child later in life?
• What are the different treatment options?
• What makes a particular treatment the right option for my child at this time?
• What difference will treatment make to my child’s life? What activities will it affect? How will this show?
• What are the risks of treatment?
• How long will the recovery process take? What will my child look like after?
• What alternatives, if any, exist?
• How long will my child be in hospital?
• Can an operation wait until my child is older?
• Would it be helpful to speak with other parents whose children have undergone similar treatment?

Doing your own research

You may be able to get a lot of information by doing your own research. There are some standard resources we would recommend which you can browse through.

• Use the NHS A-Z of conditions.
• View our list of condition-specific organisations and visit the websites that are relevant to your child’s condition, mark or scar.

You can also do your own research using Google or whatever search engine you use. You should take care when doing this but it is a good way of finding very specific information or accounts from people who have been through the same or a similar experience to you.

• Type specific questions or phrases into Google e.g. “treatments for vitiligo for a child aged three” or “what is the best cream to use for a 12-year-old girl with eczema?”
• Browse the results and see what closely matches your question, reading the descriptive text as well as the title.
• Look on the second and third pages, not just the top few results.
• Be mindful that there may be different kinds of results e.g. medical pages, forums where patients and their parents, carers or family-members have held discussions, blogs or accounts from patients and their family-members.
• Make sure you trust the sources you use. If you are reading a discussion or personal account, remember it is not medical advice, it’s just a point of view. Treat any recommended treatments or therapies with caution and ask a doctor first.

Joining online chat forums or support groups

You might come across a condition-specific forum or support group. For example, this could be a Facebook group for parents of children with a particular condition in your area.

The same suggestions and cautions apply as above:

• You will be hearing anecdotal, not medical, information. Take it with a pinch of salt and always ask your doctor before trying new treatments.
• This can be a great way to hear about different ways of coping or managing effects on you and your child’s life.
• It can be a great way of asking questions and sharing information about how to get the best medical advice, as well as recommendations of medical specialists who might be able to help your child and new treatments you can ask your doctor about.